When i was first ill, 17 years ago, i wondered if maybe i had Lupus - i didnt have a dx of M.E then, infact i only got it last year after having the mito test with Dr Myhill.
What im interested in now is wehter it could be Lupus as opposed to M.E.
I did have an ANA test (i think) last year - it was negative. I dont have unbearable pain, but i do get some joint pain and my knuckles on one hand have been swollen for two years and before this they swelled whenver i was more ill.. I do have longstanding involvment with my lungs and have had pleurisy and pneumonia more than once. I also have dry gritty eyes and lots of other eye problems including sudden loss of vision for short periods, blue flashes (all day long) severe eye pain - including when i touch them and move them around etc.
I read these alternative criteria by Dr Hughes at St Thomas's hospital (world Lupus expert)
http://www.lupus-support.org.uk/Crit.htm
And apart from the actual tests i have this exact history he describes - growing pains, teenage migraine, agoraphobia, glandular fever, pr menstrual worsening etc.
How can we know if we really have something else, when that something else is hard to diagnose as well.
I also have had in the past two years tiny red spots on my cheeks and my nose - not the typical malar rash but i never had them before and they dont go away. I was always very pale and despite hardly ever gpoing outside i often have a very flushed complexion (BP not high)
What to do about this in the UK? should i just come right out and ask my GP to test for it or play the old game of suggest the symptoms and let him think of it himself or try and find out privately or just give it up and accept i do have M.E.
Im just so scared that they are missing something and im so very very very tired of being scik and being in pain and i HAVE HAD ENOUGH of not being listened to by doctors. They dont listen to your symptoms - if you have more than 2 or 3 they just switch off.
Ill stop now before this turns into a rant.
Justy
Forgot to add, apart from the lungs it was the constant nose and mouth ulcers i had wehn very severley ill that was a red flag for lupus too and bruising and severe nose bleeds.
What im interested in now is wehter it could be Lupus as opposed to M.E.
I did have an ANA test (i think) last year - it was negative. I dont have unbearable pain, but i do get some joint pain and my knuckles on one hand have been swollen for two years and before this they swelled whenver i was more ill.. I do have longstanding involvment with my lungs and have had pleurisy and pneumonia more than once. I also have dry gritty eyes and lots of other eye problems including sudden loss of vision for short periods, blue flashes (all day long) severe eye pain - including when i touch them and move them around etc.
I read these alternative criteria by Dr Hughes at St Thomas's hospital (world Lupus expert)
http://www.lupus-support.org.uk/Crit.htm
And apart from the actual tests i have this exact history he describes - growing pains, teenage migraine, agoraphobia, glandular fever, pr menstrual worsening etc.
How can we know if we really have something else, when that something else is hard to diagnose as well.
I also have had in the past two years tiny red spots on my cheeks and my nose - not the typical malar rash but i never had them before and they dont go away. I was always very pale and despite hardly ever gpoing outside i often have a very flushed complexion (BP not high)
What to do about this in the UK? should i just come right out and ask my GP to test for it or play the old game of suggest the symptoms and let him think of it himself or try and find out privately or just give it up and accept i do have M.E.
Im just so scared that they are missing something and im so very very very tired of being scik and being in pain and i HAVE HAD ENOUGH of not being listened to by doctors. They dont listen to your symptoms - if you have more than 2 or 3 they just switch off.
Ill stop now before this turns into a rant.
Justy
Forgot to add, apart from the lungs it was the constant nose and mouth ulcers i had wehn very severley ill that was a red flag for lupus too and bruising and severe nose bleeds.